5.29.2014

A collection.

I headed back to work this afternoon. It felt great to walk back into Assisi. And then I went to the Co-op to buy some healthy fruits and veggies.

How do I feel?

Well, I am telling myself I feel really good.

So, that's worth something, right? Maybe if I can just convince myself that I feel well, I will feel well.

Reality: my head is crushing and I feel completely nauseated. When I woke up today, I had the worst headache I've ever had. I hate IVIG side effects. And they stick around for a long time. Since I had two doses this time, I guess that means double the fun.

But for some reason, I feel compelled to help people understand that I feel sick NOT from the disease ITP - but from the medication.

When people in good intention say, "I hear you aren't feeling well" - I find it necessary to explain that actually - I felt 100% fine before Saturday. I just happened to have no platelets, so I had to go to the hospital. And then I get sick from the medicine. I wasn't tired or worn down. I don't work too hard. It isn't about what I eat. It isn't about getting more sleep. It isn't about something in my genes. It's just random. It's just totally random. No one knows why otherwise perfectly healthy people get ITP. No one knows. Not even the people who have studied it for their whole careers.

Why do I find this so necessary to explain?

I'm not sure.

I guess I just don't want people to think I'm sick.

I'm not sick.

The medicine makes me sick.

My body isn't broken.

It's just over-functioning. I like to think that my spleen and other immune system organs love me so much that they want to protect me from EVERYTHING. And for whatever reason, they think they need to protect me from platelets. Eventually, I'll figure out a way to reason with my over-protective organs. They'll eventually trust me - give me a later curfew - and this will all be over. I'll be ITP-free. Someday.

I have a good body. A strong body. A body meant for health and life and good experiences.

I don't want to be known for being sick.

I don't want that to be the only update people know. I share about my health on this blog - because this is the place where I share everything. The joys and sorrows - everything. I share about it here because you know more about me than this platelet problem. I'm hesitant to share in other public spaces because I don't want "sick" to be the only thing people know.

I want them to know that I love life - and my new job - and that I'm going to train for a half marathon. I want them to know that I have a wonderful network of support - that I write and enjoy photography. I want them to know that every other blood level in my CBC is in a perfect range. That I all my organs are outstandingly healthy. That my blood pressure is terrific.

There's only one problem: platelets. Otherwise, I'm perfectly healthy. I just want people to know that. I'm not sick. I'm healthy.

So I downplay how serious this platelet condition is. I avoid highlighting the scarier conversations I had with the doctors. I don't mention how dangerous it is to be at a count of 1. I get back to work as fast as possible.

And I try my best to feel good when I feel awful. Because I just want to be healthy and smiling.

I imagine this is how most people with a chronic condition feel. They want to be healthy and smiling, they want people to recognize that even though a part of them might not be working at optimal levels, the rest of them is loving and healthy and whole. They want people to ask them about more than the part of them that is broken.

A friend recently told me that this was all part of God's greater plan.

I don't know.

But I do know God is giving me strength and perseverance. I know God is giving me ways to keep going and keep smiling. To believe that someday I won't have this issue. Someday travel plans won't get cancelled. Someday I'll use sick days for colds and not hospitalizations. I'll get through the headaches and the nausea.

So I'll keep educating myself about good nutrition. I'll do what I can to live a balanced life. I'll spend more time with books and meditation - and less with screens and gadgets. I will spend time with birds and silence and trees and loving people.

Thank you for being here. For listening and caring. Thank you for praying.

Thank you to collaborative doctors. To technicians who are amazingly gifted at poking needles into veins. To cooks who prepare amazing chocolate pudding. To nurses who laugh. To hospital staff members who keep floors and door handles germ-free.

4 comments:

Dad used to donate platelets at the Red Cross in St Paul. 3 hour roundtrip and an hour there for the procedure. I don't know if that would help you (doesn't sound like you're getting transfusions) but I know the nurses liked him for going the extra mile. I sure am proud of him for all the things he did.

Thank you for this post, Emily. Your vulnerability in this post is really a good reminder that a chronic condition does not define someone or determine if they are healthy. Life has far more facets to iit.